1. Purpose
This SOP outlines the considerations and requirements for community-based participatory
research (CBPR) under the auspices of WVU IRB.
2. Overview
Community-based participatory research (CBPR) is research that is conducted as an
equal partnership between academic researchers and members of a community. In CBPR
projects, the community participates fully in all aspects of the research process.
Community is often self-defined, but general categories of community include geographic
community, community of individuals with a common problem or issue, or a community
of individuals with a common interest or goal.
When research is being conducted in communities researchers are encouraged to involve
members of the community in the research process, including the design and implementation
of research and dissemination of results when appropriate. WVU OHRP and/or the
IRB will assist researchers in developing such arrangements.
3. General Information
3.1. The following are some questions that researchers should ask themselves/consider
as they develop CBPR. These are also questions and topics the IRB should consider
when reviewing CBPR:
Background, Purpose, and Objectives
- How was the community involved or consulted in defining the need?
-
Who came up with the research objectives, and how?
-
Is this research justified with respect to community concerns?
- Are there concrete action outcomes?
- Who benefits, and how?
Research Methodology
- How will the community be involved in the research? At what levels?
- What training or capacity-building opportunities will be built in?
Procedures
Participants
- Are the appropriate people included to get the questions answered (e.g., service
providers, community members, leaders, etc.)?
- How will the research team protect vulnerable groups?
-
Will the research process include or engage marginalized or disenfranchised community
members? How?
- Is there a reason to exclude some people? Why?
Recruitment
- What provisions have been put in place to ensure culturally relevant and appropriate
recruitment strategies and materials?
- Have “power” relationships been considered in the recruitment strategies to minimize
coercion?
- Who approaches people about the study and how?
Risks and Benefits
- What are the risks and benefits of the research for communities? For individuals?
- Are the risks (including risks to the communities) being presented honestly?
- How will risks be minimized?
Privacy and Confidentiality
- Where will the data be stored?
- Who will have access to the data? How?
- What processes will be put in place to be inclusive about data analysis and maintain
participants' privacy?
- What will be the rules for working with transcripts or surveys with identifying
information?
- How will boundaries between multiple roles (e.g. researcher, counselor, peer)
be maintained?
Compensation
- How will people be reimbursed for their time and their efforts honored without
it becoming coercive?
- How will compensation be approached?
- What provisions have been made for minimizing barriers to participation (e.g.,
providing for food, travel, childcare)?
- Who is managing the budget? How are decisions negotiated?
Conflicts of Interest
- What happens when the researchers'/staff's roles are dual in nature (they are
also friends, peers, service providers, doctors, nurses, social workers, educators,
funders, etc. of participation?
- How will power differentials be appropriately acknowledged and negotiated?
Informed Consent Process
- What does informed consent mean for "vulnerable" populations (e.g., children,
individuals, with impaired mental capacities, etc)?
- What processes are in place for gathering individual consent?
- Where written informed consent is not being obtained, explain why.
- What processes are in place for gathering community consent?
- Where minors are to be included as participants, how will assent be obtained?
- Are the consent processes culturally sensitive and appropriate for the populations
being included?
Outcome and Results
- How will the research be disseminated to academic audiences?
- How will the research be disseminated to community audiences?
- What new ways will this research be acted upon to ensure community/policy/social
change?
Ongoing Reflection and Partnership Development
- Is there a partnership agreement or memorandum of understanding to be signed
by all partners that describes how they will work together?
- What internal process evaluation mechanisms are in place?
- When plans change to accommodate community concerns (as they invariably do in
CBPR), how will this be communicated to the IRB?
4. IRB Review of CBPR
When CBPR studies are proposed, the above information will be included in the submission
materials. When the IRB reviews CBPR studies, it will include, either as members
or consultants, individuals with expertise in community-based participatory research.
5. References
AAHRPP:
Element I.4.C
